Advocacy in Genetics: A Teaching Guide and Workbook
An Individual Legal Advocacy
Story and Plan
Ready, Set, Go?
Protective advocacy consists of formal and authoritarian actions; it is often done within a regulatory or service system. The goal of protective advocacy seeks standard setting, licensure, and enforcement of regulations and codes in its outcome. Individual protective advocacy efforts are most effective when done by entry- to mid-level bureaucrats such as a social worker. These efforts strive to effect change for a specific person. A social worker intervening on a child’s behalf is an example of individual protective advocacy.
Dan Thomas was a new hire in the State Department of Public Health. Dan had a Master’s degree in Health Administration, and his title was Administrator of Health Regulations. His job included the oversight of public and private medical research programs. Dan had worked in private research before completing his Master’s degree, and he knew many of the players in the local private research community. In his first weeks on the job, Dan spent hours studying the newly passed rules and regulations on genetic privacy; he had closely followed the passage of the Genetic Privacy Act. One of his first assignments was to survey all public and private research projects in the state to assure their compliance with the new standards, and with the standards set by the Institutional Review Boards and the national Office for Human Research Protections.
Dan was in the process of planning this survey when he received a call from Dr. Claude Alpert, a former colleague. Claude was a well-respected physician in private practice and was also on the faculty of the university’s school of medicine. Claude congratulated Dan on his new job and offered to buy him lunch to celebrate; Dan found himself wondering if Claude had something on his mind other than a celebratory lunch.
The conversation at lunch was light and casual, until Claude suddenly asked Dan what he was going to do with the genetic privacy standards. Dan asked Claude what he meant. Claude looked troubled, and asked Dan to keep what he was going to tell him confidential. One of Claude’s sons had been diagnosed with HIV two years earlier; conventional therapies had been ineffective. His son’s health was deteriorating. An experimental gene therapy study that his son would qualify for was being proposed at the university, but because of the pending surveys and compliance issues with the new genetic privacy rules and regulations, the university had put a moratorium on new research projects until they assured the compliance of existing projects.
Claude had supported the Genetic Privacy Act and thought the rules and regulations were good, but he thought the implementation process was taking too long, too long for his son and others like him. Dan was sympathetic and said he would do what he could to facilitate this process. He asked Claude what kind of timeline he envisioned for the resolution of this issue. Claude replied only, "Soon, please make it soon."
Steps to an Individual Protective Advocacy Plan
How could you solve Dan’s problem?
Identify the problem – Problem Statement
What and whose is the problem?
Desired outcome or decision – Goal Statement
What are your priorities?
Who can make the decision to implement the goal?
Are you dealing with the right person or people to affect the change you want?
Strategies
How will you accomplish your goal?
Consequences
What are they?
Determining when it is time to escalate
When and to where is escalation appropriate?
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